Personal Space

For those of you who are just wandering into my sordid lymphoma tale, here’s a quick overview of her health timeline since Fall 2017.

Fall ’17: Annie was exhausted but thought it was just laziness.
Spring ’18: Annie begins having pain in her back & chest.
Summer ’18: Tumors are discovered in Annie’s spine, neck & lymphatic system.
Late July ’18: Started radiation treatments to shrink the back tumor.
Early Aug ’18: Began Extra Testing*, end radiation treatments.

Thanks, Shaq!

I was admitted into the hospital on July 23, a Monday, after an insanely painful weekend. Yes, painful, but totally worth it as I learned that the Icy Hot Tens patch REALLY works! Thanks, Shaq!

The first few days of my admission were devoted to a preliminary diagnosis (cancer, 3 different mestaticized areas) and to reducing my pain levels and testing me.  Based on the size of the tumor in my T10-T9 vertebrae, they also began radiation to shrink that area.

But for the first few days I was really in shock. I wrote like a maniac (writing was calming) and found it very hard to sleep. In my writing frenzy I missed some stuff, observations that I made along the way but neglected to ‘flesh out. I was working in broad strokes, my brush was NOT very fine!

Standing back a bit, now, a few weeks later I can go at the canvas with some finesse.

Mon – Wed
So Monday, Tuesday & Wednesday were me getting used to possibly/probably having cancer. Thursday was coming to terms with alternative endings that might not be rosy (remember, at this point Lymphoma was NOT known to be the Primary source of cancer.)

But although Thursday was mentally a ‘down day’, it was physically a very positive day because physically I was becoming steady enough to clean myself.

Friday morning was a beautiful day.  I didn’t get outside, I didn’t even see if the sun was shining, but it was a gorgeous day.

All I needed was the freedom to take care of myself, (Henceforth this day shall be known as, “The Glorious Friday Of The Free Pee”), to get myself in and out of a shower, to clean off and put on my own underwear.

Just Another Word For Nothing Left To Flush
Before I left the hospital I joked with one of the nurses about the intimate things I was threatening to put on the Caring Bridge task page, but it was whistling past the graveyard as I was FLAT OUT TERRIFIED.

Once I was home, faced with the reality of what life may be like with so much exhaustion layering every aspect of my life, that little ‘wipe me’ joke wasn’t funny at all.

On the day I returned from the hospital I could barely make it up the stairs into my house. “I need to get a cane.” was all I could say to Gerry.  I’d already lost so much energy that my goal was simply to walk up the stairs to use the bathroom.  And I didn’t make it.

And it’s only going to get harder.
And I am terrified.
And I hate our stair carpeting.

What, Me Worry?
I’m worried about being debilitated.  I’m worried about losing my ability to do the things for myself, things so personal, that we never consider that ANYONE would be involved in them except ourselves.  But it’s something so many of us HAVE dealt with, with children and with parents, and even with partners.  I took care of him 12 years ago in this way, but I’m terrified by the need for the return of the favor.

When my mother was sick with colon cancer before her death in Texas in 2005, I visited her for an extended period and was horrified to discover how she’d been neglected by some of the nursing staff at her hospital (not nursing home – hospital!)

She was so sore from being left unclean that any kind of evacuation of her bowels or bladder led to a horrific pain that she could hardly bear.  As a daughter I was disgusted, but as a mom I knew exactly what to do.  I bought a big tube of diaper rash cream, found some adult diapers, and cleaned my mother up. Over and over again.  And eventually with enough A&D ointment, love and careful washing she was healing and was in much less pain.

Pride & Pragmatism
But what I saved her in physical suffering, did I cost her in dignity? Knowing my mom, I don’t think she cared very much, she was a pragmatist. And she new I loved her.

Does a mom or dad ever WANT their daughter (or son) to care for them in such a way?  Do I?  Will I?  Is Gerry physically capable of doing what needs to be done once I’m so exhausted with radiation and chemo that we can deal with this?  My mind dwells, unhelpfully, on such matters because at the heart of it I am a cold eyed pragmatist.

Gerry’s seen me give birth.  That should be the point after which nothing needs to be asked, or apologized for, within the interpersonal actions of two people who are dedicated to caring for each other in every way that is necessary.  But what if the soul is willing, but the body is unable to help?  I repeat; Gerry’s seen me give birth.

Birth is heavy on my mind these days.  During the 3 weeks leading up to my week-long “vacation” at St. John’s this week, I kept telling my husband, “Gerry, if I hadn’t had that hysterectomy 18 years ago, I’d swear that I was pregnant.” 

But I wasn’t.

Perhaps my body, currently growing three very different clusters of malignant cancer cells, was having a type of ‘phantom pregnancy?’ growing three new semi-human lives Who knows, maybe.  Have I devised my own dark version of Triplets from Band Wagon?  Now I’ll be spending the rest of the day imagining my three malignancies, my three triplets, singing and dancing up and down my spine.

*Bone Marrow Biopsy Test, Pet Scan & Lumbar Puncture, My Triplet Tests this week!

13 thoughts on “Personal Space

  1. Gerry has seen you give birth. Gerry has been the recipient of the nursing you see yourself needing. Gerry loves you. You are loved and will be cared for.

  2. Gerry will do what needs to be done. If he can’t then Andy or Max or someone else will. And you will let them because you know it’s for your comfort. Period.

  3. I helped take care of my mother when I was 26 because she needed it and it helped me help my husband during his various intestinal hospitalizations and surgeries.
    My son is the same with his wife because of seeing us (I think) all these years.
    I think you and Gerry (and your kids) are like a lot of us – you do for the people you love.

  4. It’s impossible to imagine my son doing intimate things for me if I was ill. My husband, yes, he would and has done it before, and I for him. And while our loved ones want to be needed, I agree with you, it’s hard to be that vulnerable. I hope this week flies by for you and that you have more answers. I think these issues are easier to deal with when you know the whole picture and can move forward. Keeping you in my thoughts.

  5. I knew one of the product developers of the first adult disposable diapers. He told me about how the group working on them worked very late nights once they realized that the product they were developing wouldn’t just manage a physical need of the user, but would provide a tremendous boost to their dignity by managing that physical need so much better than the cloth diapers (or nothing at all) that were in current use. He felt they were privileged to do this work. Makes sense to me.

  6. After Ken’s stroke (before we were married), he was in a coma for 6 weeks and in hospital relearning everything (swallowing, crawling, walking, talking, reading, writing) including toilet training. One nurse told us to expect he’d never regain because most stroke victims don’t. He did, but not before he peed on my shoes (and we laughed about it), pooped in the shower because he couldn’t move fast enough to get to the toilet, had terrible sores from incredible diarrhea – all of which I dealt with. Was this the way I wanted to spend my time? Of course not. I loved the man enough to do whatever was necessary, and he loved me enough to trust me to do the necessary things for him. Just like you and Gerry. Love to you!

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